We had a "Tubie" Party!!

We went to Children' GI yesterday for a 6 month appointment! Leilla has been seeing a Gastroenterologists since she was 2 months old. She had severe chronic reflux issues that were managed with medication as well as she was/ has been failure to thrive. All of these factors put together resulted in the g-tube placement 2 years ago in March. Throughout the last few years she has been on a feeding pump (call a kangaroo) , which constantly fed her throughout the night. Leilla got cellulitis when the gtube was placed, adding another 2 week stent at Huntington Hospital.She has had Occupational Therapy as well as Feeding Therapy, and a nutritionist to help her along. She had to learn to eat, chew, swallow, and suck a bottle. At one point she was getting all of her nutrition through her feeding tube and all the supplies that accompany it.

We kept a very detailed excel spreadsheet documenting how much was going in and how much she vomited, in order to calculate the caloric intake she was actually getting. A lot of the "things" that she has gone through I have already forgotten, which is probably just my coping mechanism.

After two years of time intensive work Leilla finally got her "tubie" removed!!! In anticipation of this we told her we would have a celebration party. After the removal she picked out cupcakes and we celebrated another huge step in her recovery :) Of course its very sentimental to us, so we kept the tube. Kinda weird , maybe? But it signifies just one more time all that we/ she has overcome.

The prayers and words of encouragement have really helped us throughout this journey. We wouldn't be where we are today without the loving friendships and most importantly His strength.

I hope these don't come across as "dramatic" but it really helps sometimes to literally look back and see what we have been through and come out the other side. People who know us and/or Leilla now have no idea the glory of God unless we tell our story. These are from when she had an NG tube (which goes thru her nose, left pic.) and her gtube placement two years ago. From then to now...... She is now sleeping in her own big girl bed....with NO TUBES!!

Above this post is also a video I had made two years ago when Leilla was fighting for her life. It still is very relevant as the week of Valentines is the annual Congenital Heart Defect Awareness Week.

Much love to our readers :)

Scott, Jaimie, Caden, and Leilla